Close to a Cure

September 17, 2003 by  

I just wanted to share this with you all.  They are SO close to a cure/treatment for SMA.  It is so exciting to be able to see as the time approaches and to remind us all why we work so hard for the fundraiser.  I love that the clinical trials are thru doctors that are FSMA funded.  We know that 25,000 dollars was blessed and will continue to bless others.  Darrell Alan, Savanna’s little boyfriend, will be participating the in the Valproic Acid clinical trial so I will be able to keep you all up to date on his progress.  They expect to see AT LEAST 10% increase in muscle strength.

Thanks for all you do!

Love,
Mindy

Dear Members and Supporters of Families of Spinal Muscular Atrophy,
Today we are announcing an important step forward in our efforts to find a treatment for SMA. Two clinical trials are set to begin using 2 different drugs that have been shown to increase SMN protein levels. Project Cure SMA team member, Dr. Kathryn Swoboda, and her team at the University of Utah and Primary Children’s Medical Center will conduct these studies in tandem. Both studies are drug safety studies that will examine the tolerability by SMA patients of medications currently available for treatment of other diseases and conditions. More information about these clinical trials can be found at
http://www.fsma.org/curesma.shtml

I would like to thank the entire Project Cure Team for their dedication in developing the reliability measures for testing outcomes. I would also like to thank all of our families and our incredible chapters – it is through their commitment that Families of SMA is able to fund these two clinical trials.

Thank you,
Audrey Lewis
Executive Director, Families of SMA
audrey@fsma.org

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